The Hendricks Family Blog

My name is Kristine, I am a wife to Tom Hendricks, mother to Nik, Ashley, Tommy and Tyler. We live in Saint Louis Missouri. I started this blog after Tyler was diagnosed with Cystic Fibrosis. Not only do I hope to keep our family and friends up to date, but also for me to have a place to go with my thoughts. I have found others that understand what I'm going through, that have been there already or are facing it all as I am.

Tyler's mutations are deltaF508-621+1g>T

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Cystic Fibrosis Facts

_Cystic Fibrosis *CF* is one of the most common genetic diseases, especially in Caucasian populations, & affects about 30,000 people in the United States. An individual must inherit two defective genes (one from each parent) to have CF. The defective genes cause the body to produce abnormally thick and sticky mucus that clogs the lungs, and causes difficulty breathing from mucus accumulation in airways. It can be detected by faulty digestion and deficiency of pancreatic enzyes, which keep the pancreas from breaking down and absorbing foods.

-Without treatment, Cf results in death for 95% of affected children before age 5.

-The median age for people with CF is about 36 years, but the number increases each year thanks to new medicines.

-About 1,000 new cases of CF are diagnosed each year.

-More than 95% of men with CF are sterile.

-CF occurs in aprox. one of every 3,500 live births.

-One in 400 white couples are at risk for having children with CF

-Each time two carriers conceive, there is a 25% chance that theit child will have CF, a 50% chance the child will be a carrier of the CF gene; and a 25% chance that the child will be a non carrier.

-More than 10 million Americans are unknowing, symptomless carriers of the defective gene.

-The mucus build up can block the bile duct in the liver, eventually causing permanent liver damage.

-CF appears usually in early childhood where diagnosis is most important. Today, mother's can be tested while they are pregnant to see if their child will have CF.

-There are more than 1,000 different mutations of the CF gene.

-A sweat chloride test is the standard diagnostic test for CF. A higher amount of salt found in the sweat indicates CF.

-To help with digestion, many CF patients take enzymes with their meals to help the pancreas break down the food.

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Monday, December 21, 2009

Merry Christmas

I just want to wish you all a very merry christmas... and say a huge thank you to all of you that have given me advice and support. The first person I met on here that I owe my sanity to is Jen and her adorable little Gavin. Reading her blog and seeing all the pictures of Gavin Livin a normal life gave me the ability to have hope for Ty. She is the first one that told me it was going to be ok that I would work through been so depressed about his diagnosis. I am so thankful to all of you for all your comments and giving me a place that I fit in with Tyler, you have all been through it so I don't feel so alone. So, a HUGE ...Thank you...and Merry Christmas

5 comments:

What is normal for us may not be normal to others. But if we live in a depressed, paranoid life, then how can we cherish the wonderful little lives we have created?

I have taken Carson to at least 11 different states and I end up taking A LOT of equipment, but his feeding pump, pulse ox, nebulizer, and portable O2 isn't going to stop us. LOL

I hope that you find in time that everyday gets a little easier. I have my moments when I'm exhausted and feeling a little overwhelmed. That is normal. But I have a great support system through friends I have met on the blog and outside the bloggy world. I hope that you can experience that as well.

Hi there! My son was diagnosed at 3 weeks, he is now 2 1/2 months old. Everything is still very new and I still have lots of learning to do but I find the CF community online is so great and has been so helpful so far. Even with the meds, salt, and physio, these little guys are the most amazing little babies! Hope you have a great Christmas, filled with lots of joy and love!

Hi, my son is almost the exact age as Tyler and was diagnosed with CF at birth. Apparently, Tyler and my son Bennett have the exact same genetic mutations: Delta F508 and 621+1G>T. Here is my blog: http://bennettgamel.blogspot.com. I'd love to keep in touch as our boys grow and we cope with the shock of our life! Do you have a facebook account or email? My email is breckgamel @ yahoo . com. Thinking of you.